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Crohn's Disease Forum » Parents of Kids with IBD » CT scan - some thickening of proximal duodenum?


 
02-05-2017, 02:15 PM   #2071
Niks
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Niks,
Seems to me she really needs to see a specialist who deals specifically with these issues of motility to find out what is behind this.
She doesn't even have a Consultant anymore, she isn't 'under' any specialist, it is all so frustrating. Gastro at Oxford pretty much ditched her when he realised that her bowel doesn't work, which is something that I'd been asking to be tested for years! She moved on to a Surgical Colorectal Team, but since the stimulator was refused, she has also dropped her. She has her GP and the private Doctor, who did the trial....

I am going to see if I can find a specialist, thank you Kim xxx
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02-05-2017, 03:56 PM   #2072
kimmidwife
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Niks,
That is just ridiculous. I wish you guys could come here to the states. That is just terrible.
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02-05-2017, 04:57 PM   #2073
kimmidwife
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Niks,
Someone gave me this link to a Facebook page for people in the U.K. With GI motility issues,
https://www.facebook.com/groups/GIFTuk/

Hoping you can find some help for her.
02-09-2017, 01:55 PM   #2074
Niks
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Niks,
Someone gave me this link to a Facebook page for people in the U.K. With GI motility issues,
https://www.facebook.com/groups/GIFTuk/

Hoping you can find some help for her.
Thanks hun

xx
02-09-2017, 02:22 PM   #2075
kimmidwife
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Niks,
Keep us posted!
02-15-2017, 04:34 PM   #2076
Niks
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Jaime called me today, hysterical. She asked if I was sat down, I thought someone had died!! She had a call from her nurse saying that her funding has been approved and she's having stimulator fillted on 17th March! I can't believe it!

Wooooo hoooo!! After all this time, and it's so close now
: luigi:
02-15-2017, 04:43 PM   #2077
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Yay!! So happy for her!!
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02-15-2017, 04:57 PM   #2078
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That's wonderful!! It's so soon !!
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02-15-2017, 06:19 PM   #2079
my little penguin
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Such great news
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02-15-2017, 09:16 PM   #2080
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That is amazing news!!!!!
02-17-2017, 11:23 AM   #2081
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Fantastic! What good news
02-17-2017, 08:00 PM   #2082
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That's so wonderful!!! And about dang time. I hope it works for her. So does this mean she's back under the care of the colorectal surgeons??
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02-18-2017, 02:22 PM   #2083
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Woohoo! Wonderful awesome news!
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02-19-2017, 09:07 AM   #2084
Niks
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That's so wonderful!!! And about dang time. I hope it works for her. So does this mean she's back under the care of the colorectal surgeons??
Yes she's back under colorectal surgeon. She's a little apprehensive, when she was initially told about this procedure, she was told it would be done under general anesthetic, but she's having it done under local. It takes about an hour and a half. When they put in the temporary stimulator, they needed her to tell them when she was feeling sensation and where, so maybe this is why.

Thank you all for your kind wishes. xx
02-19-2017, 08:19 PM   #2085
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Niks,
Keep us posted!!!!
03-20-2017, 07:30 AM   #2086
Niks
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Hi All

Stimulator fitted last Friday. Went well. She's feeling bruised and sore but okay! Just waiting for it to start working. Apparently there's many programmes, so may not work initially, they may need to play with the programmes.

Will keep you all posted.

Nikkie
03-20-2017, 01:27 PM   #2087
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Wonderful news, Niks! I hope she finds the right settings quickly!
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03-20-2017, 05:47 PM   #2088
DanceMom
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Hi All

Stimulator fitted last Friday. Went well. She's feeling bruised and sore but okay! Just waiting for it to start working. Apparently there's many programmes, so may not work initially, they may need to play with the programmes.

Will keep you all posted.

Nikkie
My mother has had to adjust her settings as well. You'll find what works.
03-20-2017, 06:59 PM   #2089
kimmidwife
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That is amazing news!!! Keep us posted!!!
03-26-2017, 04:16 PM   #2090
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Great news!
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03-28-2017, 03:09 PM   #2091
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Fingers crossed they find the right setting quickly
09-05-2017, 04:10 PM   #2092
Niks
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Hi all, hope all going okay with you all.

So.... Still not found right setting, but she's working through them for a month at a time so could take some time.

Urine retention getting worse, and having to self catheterize, however tubes so small had to have them stretched (again). This is the exact wording from the letter from the urologist, received today....

"Jaime underwent cystoscopy today and I am sorry to let you know that she has a large capacity bladder and the bladder looked moderately to severely floppy. Her urethral was found to be modestly tight and i performed a dilation. I plan to see her in 6-8 weeks time and we will take it from there."


I don't like "I am sorry to let you know" - but surely can't be dreadful or he would have seen her sooner?

So confused, does anyone have any experience of these symptoms and have any idea what it could be. Could it all be connected?

Many thanks in advance

Niks
09-05-2017, 08:19 PM   #2093
kimmidwife
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Niks,
Has she ever been checked for Ehlers Danos Syndrome?
It might fit the picture.
09-06-2017, 10:20 AM   #2094
Niks
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I don't think she has! It's just frustrating that there are more and more things that are going wrong for her.

Thanks for your reply I will check this out xx
09-06-2017, 11:16 AM   #2095
kimmidwife
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Nik,
Sadly we are in the Same boat with my daughter. New things keep popping up constantly.
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